Tag: Chronic Illness

Hm… so I still feel like I’m behind on a lot of things, like understanding how taxes work and what the right kind of skin ritual I should be doing at night. But I do feel like I’ve come a long way since college. To be frank, in the past two years I finally wrapped my head not only around therapy, but accepting that I could use medication to help with the crazy amount of depression and anxiety I had been struggling with. I felt like I was mentally drowning so much of my life that it almost made me accept that this was the norm, and that either everyone else around me felt the same and was just handling it much better, or that I was very different and there was something wrong with me.

I still feel emotions of course- sometimes I get a bit down or upset, sometimes when I focus on my health and how different my life could’ve been if I hadn’t gotten ill, where I could’ve been. But it’s nowhere near how I used to feel- hopeless, trapped under this giant heavy cloud that was drowning me of any ambition and motivation. It’s therapeutic to write on here for how much of my mind is reflecting on the “negative” aspects of my life, which don’t play out too well with everyday conversation and interactions with people.

That said, adulting. I used to feel completely naked and vulnerable whenever I had to ask someone for help, like talking to professors for understanding and assistance in my grades and absences that go hand in hand with chronic illness. I used to feel my whole day ruined when I forced myself to trek short of breath anywhere: to class, to the mall, just because I wanted so desperately to act as normal as I looked on the outside. It was too much to accept how severe my health was, and that it would always be this way until it got worse.

I’m worried about getting ill and losing my job, it can make me panic to realize that my youth is leaving and my chances at a youthful life are slipping away, and even worse that these struggles will never leave- I have to simply adjust my perspectives.

But for now, I still have my job, I’m still learning to speak up about my health and reasonable accommodations for it without feeling ashamed or acting like a victim, and that so many things are out of my hands.

This week, my parents left for Taiwan. I hope they’re having a lot of fun and enjoying their 60s. That said, it does make things a bit harder for me, such as expending a more limited expectation on the mundane chores I have to take care of everyday- cleaning up after my dog, cooking, washing dishes. But it’s nice being alone, so that I don’t have to talk to anybody, and I can do things at my own pace without judgment. I rest when I have to, and give a bit of energy here and there to manage it all. I’m trying to eat up all the food left in the fridge by myself before it all goes bad, so I’m stuffing myself with two bananas a day, eating perishable foods even though they might not be my cup of tea.

I went to UPenn Tuesday, and my lung doctor said the antibiotics appear to be working and the inflamed white lining around the hole in my lungs seems to be thinning out comparing it from April to August, which is great. I do realize now that I’m getting closer to my usual baseline how it was definitely worse last year. When I took deep breaths, the ceiling of my breaths were lower, so I got short of breath more severely and quickly, and as a consequence, I got more fatigued and uncomfortably short of breath/dizzy.

I was annoyed by this person who was administering my breathing tests, and he was super cheerful and when he opened up my patient charts, he was all “omg, I can’t believe you have severe COPD?? No way, you don’t look sick at all.” I wasn’t going to say anything, but it really irks me when I get that. So a couple seconds later, I told him “I mean, you can’t see lungs on the outside, can you?” And he said that’s true. He tried to make amends by saying that some people spiritually seem really low and defeated and carry it with their aura, and that I don’t. So I guess that was a slightly nicer spin. Having these comments said to me always fed me imposter syndrome and made me feel like I was playing a special card to ask for help, because it seemed like rarely did someone believe me when I asked for help. It’s really frustrating.

My friend from college came to visit me Friday evening, I really appreciate when friends make an effort to stay in touch with me, even if the time we see each other has stretched to a year apart. I saw my neighbor/best friend briefly so she could help me eat some food in my fridge Saturday, then she encouraged me to go to the gym before it got even colder Sunday, so I did. After I returned, I was again thankful that she gently pushed me to go while it was relatively nice outside (60’s). And now, today is Sunday. It’s cold, my nose is cold even with my sweater and socks, so I just start to feel lethargic and want to bundle up in a blanket and not move at all. I’ve managed to be sort of productive though, and have made headway on cleaning up the bathroom and my dad’s room, and then eventually will put away my summer clothes in my room. I’m throwing away my old pill bottles, making lunch, going to clean up the dishes soon, and then will go back up to finish cleaning and taking a shower.

My dad’s room is full of random things and it’s all over the place at the moment, which is ironic because he’s the cleanest in our house and regularly vacuums the entire house down. I know he’s been super busy and overworked lately, so I think now that I have energy to recharge this weekend, I am able to go and organize some of it. My mom cleaned her room and my room before she left, so it’s nice because I am pretty crappy at folding the bed, and that takes more energy than other things.

I’m also busy cleaning up my dog’s poop, which is like 3x a day but feels so much more frequent. When I have to raise my body in any sense vertically, like bending down to pick up her poop, I notice that it affects my heart rate much more than other movement.

It’s come to a point in my life where I feel like I’m living two lives. I try really hard lately not to separate the two, but there are always certain moments that so clearly remind me how there often feels like two separate realities.

When I’m alone playing Toon Blast or Youtubing, it’s pretty chill now actually. Sometimes when I’m stressed, being alone made it worse, but lately because I have work and some sort of rhythm to my daily schedule, being alone is now nice to unwind. I find ironically, that the moments that remind me most of my circumstances is when I’m at a party and hearing them talk about their lives. Although my confidence has definitely grown throughout the years, the insecurities suddenly make themselves apparent through the most subtle and casual conversations. Couples outnumber the single members, and all the talk surrounds wedding dates and engagement plans. I find I have nothing to contribute, and I’m also feeling insecure that my personality does not blend in seamlessly with theirs. I always feel like I’m the misfit in any group, and sometimes I really think it’s a me problem, and not a general “it is what it is.” Perhaps I am not engaging enough, outgoing enough, I don’t have that spark that naturally draws people to me.

And while everyone chatters happily about their career, their significant others, their last trip abroad, my mind browses quickly through what my own contributions to the conversation could be, and it comes up with all negatives. Yes, I can say I have a job now, but it still feels like it’s not enough. I start to think there’s something wrong with me. Part of me is too introverted, the other part just doesn’t have the energy, literally, to make my presence known and memorable. I’m the floater who’s sometimes there, but no one would miss me if I wasn’t.

And if you really wanted to know what’s going on with me. I’ve been going to therapy to become comfortable with the idea of my decreasing health and that I must become mentally prepared to die, whether that’s in the next year, 5 years, or 10. How’s that for a party downer? Even as my own friend is talking about her wedding, this thought seeps into my head, what if I don’t even make it to your wedding?

Yeah… just a blink ago, my brother remarked on how he was starting to attend weddings and other adult things that seemed 20 years away. 20… LIGHTYEARS AWAY. Cause now it has reached me. Yep. Me.

Newsfeed on facebook, all day, e’eryday, people be getting engaged with their couples pics and bling bling rings, and even POPPING OUT LITTLE HUMAN BEINGS.

Like, time is supposed to be slow, but it is speeding up lately. On a scale of MY personal level of stress, it’s been a solid 5.5/10 lately, which is not too awful. But mostly, I think it’s probably a topic I’ve written about quite a few times now, and that’s how everything around me lately especially with my friends is related to couples, and relationships, and engagement/wedding talk. I feel like maybe I’m exaggerating, but then the topic comes up and I’m like nope, I am not imagining this.

And I want to be chill, content with who I am and my own journey and all those philosophical quotes that remind you about self-acceptance and all that, but then I have so many moments where I cool down and all the doubt and uncertainty of the future floods in. I’m constantly wondering now how much my potential really is in career, in how confident I am in my standards of dating, and my ability to continue trying my best to get my shit together, or appear to have my shit together, while enjoying life in the now. And it’s really difficult – I definitely feel like I have so many to-do lists constantly, from the small to the big, like laundry, and laundry, and food prep, and insurance things, and doing that thing for my dad, and counting my finances, and worrying that all the meanwhile that I try hard to be in the now, everyone else has planned out their next steps, whether it be a trip abroad, moving in with their bf in the following year, or getting into grad school.

And while I haven’t been exhausted in that out-of-breath way too often, lately I’ve been sleeping A LOT. Remember when I had major insomnia and anxiety, to the point of feeling psychotic? Now I nap around 3-4 hours a day on the weekends .___. I don’t know why, and I don’t mind too much, but why am I sleeping so much?

All I can do now and continue to try to remember all the things on my weekly to-do list, and to try to go to the gym on a constant basis, stay patient on where I am in the workplace, and try to navigate and learn whatever I can. Stay as healthy as I can be. Find the line between ambition and satisfaction.

I want to write a wise journal entry today about how I’m thankful that I have a roof over my head, food to eat always, and my family, friends, and still some independent ability, but all I feel is negativity. Not depression at its worst as I’ve felt before, but on a scale of happiness, it definitely drooped more. Especially considering it’s summer and should be the highlight period of my year.

Let me jolt down some actual and pessimistic thoughts and conditions lately:

I felt very frustrated and angry that someone at work falsely accused me of abusing my grandmas handicap placard to HR. First off, one grandma is deceased and the other is halfway across the world. I felt very wronged and misjudged, and not even able to confront the situation as I don’t know who reported me. I felt angry that with all the shit I’m dealing with, I have to justify my legal use of trying to help myself out and make life just a tad easier. I also would rather not be short of breath and constantly exhausted that I have to take a poorly paid part time job. This incident has made all my other issues affected by my illness amplified, and I am aware that I am in a poor attitude mode these days and have been very short tempered with my mom, and barely tolerating incompetent or creepy people at work. Guilt- the definition of feeling and hearing someone’s elses feelings and thoughts louder than your own, and them fighting in your brain.

Leading to my next point, I also would rather not have to go to Upenn every single month and do a bunch of unpleasant tests like bloodwork, cat scans, following up and scheduling with doctors, going to a psychiatrist, therapist, taking 10 diff kinds of meds each day, and also having other symptoms exacerbated by my weak body. Trust me, I want to appreciate my body that I have one at all and appreciate any functions it does have, but right now, I just want to complain about all the bullshit I deal with.

Relationships and Weddings:

Everyone around me is in or getting into a relationship, and it feels like their lives are all planning or moving on towards the next step: moving in, getting engaged, getting married. I want to feel confident in my singleness, but I don’t. It’s kind of gotten to me and made me feel left behind even more so in all the other ways I feel left behind, and I wonder if it’s me or just the circumstances that I happen to not be in a relationship. I went to a bbq this past weekend and literally there was only couples there, besides me and my bestie. Possibly 3 other single people, out of 30-40 people. Also, my friend is planning her birthday, and my entire friend group asked if they could bring their significant others.

Making the “left behind” feeling worse, I realize that while I am grateful to be a part of anyone’s lives at all, I also feel shitty that some friends I thought I was at least decently close with in college haven’t invited me to their wedding- I was told not to take it personally, but it just reminded me of all the times growing up and in high school where I struggled to find solid friends, and how I was always the one on the fence that people thought of maybee inviting to their parties and events.

On the other hand, it made me worry even MORE that if I were to be chosen to be part of someone’s bridesmaid or maid of honor, would I even be up to the task? I may be too busy taking care of my health to even make it to their wedding or event, and that makes me unreliable (my health, but aka me). It’s not fair, and I really want to do those things for one of my friends. And my best friend isn’t even planning on dating or getting married, so I don’t even get to 100% be someone’s maid of honor -_-

I’m thinking, am I going to literally live with my parents and depend on them forever? For awhile it felt like that was an okay situation, but then my mom would say little things here and there that would add up, and make me feel a little nuts and wish there was some space between us where I could have more independent choices, and not constantly have to put up with another opinion on my clothes, etc.

I had a major headache at the bbq this past weekend, and so I didn’t enjoy myself or socialize much with anyone at all. It was all I could do to be present at the bbq at all. I was so tired and just wanted to be out of the house and have a break from my house and parents. I went to Upenn today, and had a fever of 99.8, and even though my cat scan shows that the cavity walls around my hole in my left lung is thinner aka less inflammation, the lungs have slowly but surely been progressively deteriorating. So it’s like I’m falling down a giant decline on a mountain and this news was just a slight rock hop before continuing screaming and falling down the decline.

I want to break down and cry, and I feel all this pressure and tension inside my head and my neck and shoulders, but it’s not coming out. It’s stuck. I had an upset stomach and also my nose started bleeding again, and although it’s a bit dramatic I feel like my body is falling apart all over the place. I literally just fixed my yeast infection and eye dryness. There isn’t even anyone that I can target all my pain and anger at, that I can just direct a giant “FUCK YOU’ to. It’s just luck, fate, whatever.

Trying to be mindful of human nature and not getting too greedy with what I want. Two months ago, my main goal and source of happiness would be to just get hired for a job, any job. Now I’m tired of it and finding the work very uninspiring and feeling like I’m undervalued and just doing bullshit repetitive work. I suppose this is normal, and at least a “normal” problem to be stressed about. But then I think about what could’ve been, how far my potential could be, and how I will probably never know because I am constantly being limited by my body.

It’s summer, and it’s usually where I’m doing relatively well, as well as I could be doing for my condition anyway (COPD). I have a part-time job that is manageable, and it’s as normal to normal as it can be – I have a set schedule of waking up around 8:20am everyday and coming home by 4pm to rest, eat dinner, prep, rest, repeat. Even the pill popping at night has become a pretty standard routine that doesn’t bother me much. I stay busy physically and mentally, but then comes the visits to Upenn every month or so for fv1 testing, and sometimes it’s okay, some other days it’s less okay. The past week, I’d been trying to obtain a note from my lung transplant team verifying the medical needs of staying with the same psychotherapist who treats me with anxiety and follows me on my chronic illness journey; we hope to get a single case agreement with the new insurance company.

Sometimes I get a bit of a panic wondering what it would be like with me surviving an illness that limits me in so many ways, financially, physically, etc. The only thing I can control is my emotions and mentality, so that’s what I’ve been trained to focus on. What if my parents weren’t there for me to depend on? Nobody else would care. My nurse practitioner wrote me a medical note that I could give to the insurance company, and in it it describes me as a very young patient with severe lung disease and one with a “terminal illness.” It was so weird to read that part. She had warned me she would use some scary words to make her point across. But what freaked me out later was the realization that she wouldn’t use it to straight up lie– it was at least true and relevant to me even if I felt like I was managing my day-to-days okay. I am someone they all are monitoring to see when, not if, my progression starts to decline. But again, I can’t focus on these thoughts because they don’t contribute positively in any shape or form.

For me to be questioned at work when I park in the handicap spot by a co-worker, these things feel so ridiculously unfair. Yes, I don’t look sick enough. But yes, in fact, I do not have a mild disease, but a severe one. I am just young and able to fool people in the short term run.

To end on a good note though, this woman I’d been following who is just a bit older than me with cystic fibrosis (fighting2breathe) was severely ill, on the hospital bed for months in California. And she received her second lung transplant and looks like she is on the way to recovering. I am so happy and relieved, and hope that for all her suffering and strength, she is able to have the life she wants, with her husband and future kids like she hopes to have. That’s her biggest wish, and yet most people around me take those for granted.

I don’t pray to be successful or have anything given to me: I want the opportunities to be able to become successful on my terms, and the drive and determination to get there regardless.

I’ve started my second week of work, and I remember thinking of my last job and how excited I was just to have a job and be healthy enough to go to work everyday. After a couple months though, the excitement wore off and the work became mundane- I felt restless and uninspired, not to mention the weather got colder and more difficult for me.

I had this thought at the end of last week that it seemed I was nearing the end of my training and picking up most of what I could pick up at this job and place, but I really hoped that wasn’t the case. Thankfully, I think I still have a lot to learn, and if I do well and still last here 3-6 months later, maybe I’ll get a raise or they’ll consider moving me to another higher position in data. Ideally, my image of “making it” career-wise would be to climb up the ladder in terms of data analyst, then data scientist, of which the avg annual income is ~$100,000. Even though money isn’t everything, it would definitely be one less thing to worry about and would make life a little easier. My hospital stay for just 8 days last year ended up costing ~$50,000… I don’t know how people are supposed to survive and pay that without insurance in America. Definitely a huge problem. It’s inhumane not to provide people with the basic ability of maintaining their health and welfare.

I’m glad that compared to certain peak times of my life, these past months I haven’t had to visit doctors an incredible amount- I have to take off once a month so far, and I try really hard to book my appointments for other things after my work ends, which is possible because it’s part-time. As I grow older, I become more and more aware of spending money practically, and investing in things I need. Really need. Like work clothes. What I WANT are a nice new pair of bose headphones and for my mac computer to have sound again, but so far, I am living life fine without either. Shout out to you Sean if you’re reading this lmao because I use bluetooth on the sleep machine to get sound when I connect it to the laptop 😀

So what I want to be thankful for now, and what I have to keep reminding myself when I start to feel bored or annoyed that I have to go to work, is that it is a blessing to have the ability to have a job and to make it there everyday. I remember those cold winter months where I had really bad winter blues and was alone and so frustrated that I was just full-time sick, watching everyone else simply have opportunities to hit their goals. I don’t need anyone to hand anything to me, I just want the opportunity to earn it. Because now that I am not down with the flu/cold or my lungs are fucking with me and I can manage my current job so far, I feel confident that I have the drive and the ability to learn and make it to where I want to be. As long as life doesn’t throw more shit at me (which I know it will), I can do it. And that is one of the biggest leg ups I have over my competition. I know what it’s like to simply not be able to try. When you’ve never known what it’s like to have a chance feel like it’s completely robbed from you, you don’t know anything else except to take it for granted.

I know I’m not earning that much right now. But it’s a step above not having the ability to earn anything at all. And even if I get fired now, I already picked up so much on the corporate world in one week, and other random technical jumbo I never thought twice about that impact our lives very much, that it’s okay: I know it wasn’t a waste of time. Absorbing knowledge is great 😀 I’m starting to migrate towards analyzing real work this week in their many Excel sheets… my biggest wish is that the learning doesn’t stop here and I’m not stuck doing this for weeks on end, or for the rest of my position there. Give me a chance to prove what I can bring when illness doesn’t prevent me, and I will kick ass.

So I always feel like I’m not doing enough. For myself, for other people. It’s a lot of pressure. I’m consciously making an effort to think of all the things that I AM doing though, and there are a lot of things actually that I’ve worked towards and improved on despite all the other regular shit going on.

Crisis Textline Volunteer – in the process of being trained. I already agree with a lot of the things I’m being taught in the guidelines and videos, so that’s a good sign. I worry that I won’t be able to handle it emotionally and will feel like a failure. But I still think it’s a good challenge to try. Text HOME to 741741 if you’re looking for support.

Starting a new job as a Data Entry Specialist this upcoming week- again, feeling like I might be a failure if I can’t hold onto this job or feel sick and end up quitting/getting let go. But that’s another thing I’m working towards for summer plans, and I hope I at least learn something.

Dating – Yeah, I had an anxiety attack last night thinking that I’ll never find somebody, but I did go on a few dates and it’s probably hit the end of the road in that department for now, but whatever I tried lol yay me.

Seeing friends – I’ve definitely made a huge effort to stay present and updated in my friends’ lives, and I am pretty content with my social life at the moment, which is a rare thing.

Body – I’ve hit my weight goals and also hit the gym 9 times the past month, which was my original goal all year long and I wasn’t able to hit that goal until recently. I do see mild tricep/bicep lines, but legs and butt still feel like sticks. Regardless, I’ve also taken up Sunday yoga again and I’m happy I forced myself to do that because it does help more or less. My parents also go on evening walks and my dad goes on a few runs each week, so I’m also proud of them!

Hella cliche I know. But I was thinking about how the past UPenn hospital visits have only become increasingly difficult, with more doctors from different departments added on each time. It definitely took off in the “worse” direction around the time I decided to do the lung transplant evaluation. I was rambling to my friend about making lemonade out of lemon, even if it’s kinda shitty, just to make it edible enough is good enough for me.

I used to be someone who just kind of enjoyed bubble tea. But now bubble tea has taken on a whole new level of meaning for me. It’s the reward I looked forward to after my rough appointments and tests. It’s forever going to be ingrained as a positive memory I will cherish, grabbing Mr. Wish with my dad or my parents, a ritual you could even say.

So with all the rough memories that are occurring in my life, I am still trying my best to balance it out with each visit ending in lemonade, even if sometimes it’s only barely edible.

Create your own silver lining? It’s damn hard but I’m trying anyway.

On a slightly separate note, I think I’ve finally reached that point where needles don’t completely send me into a near anxiety attack. It’s my 20th or something blood test/needle in the last year, and now I kinda just stare at the needle in disdain. Still a bit nervous, but not nervewracking. You just don’t know how strong you are until you’re forced to challenge yourself consistently.

My mom has talked to me about what it’s like to live in another country where English is its primary language but not yours. There are a lot of struggles that I can only imagine, as I am privileged to grow up understanding two different languages and two different cultures. There are times where they clash, but it was overall still much easier to absorb for me than for her. There comes the theme of caring less what other people think, and doing what’s best for yourself. Even though the situations vary for all of us, the feelings are very similar. Anxiety or worry about how others perceive us, how they judge us.

It frustrated me that it was frustrating for her, and that she could not seem to overcome those feelings. More relevant, to become more self accepting of myself so that I have the courage to reach for things I want out of life. Particularly with the process of dating and fearing the reception and outcome. It is really difficult. But I really have to work on becoming okay with who I am, chronic illness included. It doesn’t define me, but it definitely affects me in so many ways.

Yeah… trying to stay on the wagon and the momentum but instead of keeping my eye on the ball, the eye is kind of wandering and looking elsewhere, the prize is looking a little out of focus.

One day I can wake up feeling relatively upbeat and feeling that drive, but the next I’ll wake up feeling the physical aches and translating to mental energy loss as well. I start to second guess myself and wonder if I’m worth ever being hired, and if I were, if I was ever meant to be able to hold onto a solid career and maintain it without sacrificing my health and ending up in the hospital again.

I scroll through my private Instagram, and to watch the journey of a woman close to my age go through the whole lung transplant process, and to slowly die, waiting for another chance to breathe and live, I am getting secondhand agony and secondhand anxiety: is this the predetermined path for me as well? The answer is yes, and yet I want to look away. Because if I stare at it too long, then I will lose all resilience in the other goals I want to accomplish in the meantime.

I’m reading this really enlightening book called “Sapiens: A Brief History of Humankind” and it’s a very thoughtful, well-rounded reflection that is bursting with info from evolution, biology, history, to religion and revolutions of the human species. I have to say, it held a lot of questions about Christianity and all the strange potholes and contradictions that have always made me a bit uneasy. But to imagine that we are truly alone in our struggles and are left to suffer mindlessly is also pretty depressing.

I feel lately like I am doing so much yet nothing at all. Accomplishing nothing except making it to the next day relatively healthy, and trying to build at doing normal productive things like exercising, spending time with family, reading, learning, and hanging out with friends if the weather and my body allows it. I sometimes feel proud of myself, but then I’ll look at a friend or someone else’s life, and it makes me so overwhelmed wishing so hard that I could do better, and that it is never enough. To have a job to go to everyday, to travel with friends, to have someone hire me and believe in me and validate that I’m worth it despite all my problems. I want to have a moment where I can look at myself like, yeah, I made it. I did this.

What I keep reminding myself is that it is already a huge accomplishment that in comparison to my taking steroids 5 times last winter, I did not get sick at all this winter. Of course, it was at the expense of staying home most of the time to minimize risks and exposures, but it is still a good thing to stay safe. I have spent my time wisely lately and in dragging my ass to the gym and watching what I eat. I am almost at my target weight of 105 lbs, and I have been eating cleaner- mostly filled with oatmeal, boiled egg, chicken, and lots of fruits and veggies.

If I cannot obtain my career dream at this point in time, I will continue chasing my other, which is to push my body to the fittest it can be. I want abs of steel, stronger thighs to walk with, my bicep and tricep lines to show when I flex, a butt, and a better posture with chest presses. I was walking yesterday and realized that I was much more aware of the muscles in my legs, and it encouraged me to continue being persistent. To feel like I got hit by a truck every time will be worth it in the long run when I can look at myself in the mirror and be proud of what I’ve built. This is one of the days I can work towards in my control, as long as I don’t get sick and I keep up with what I’m doing without getting stagnant again.

My body is kind of what I deem a bad charger- it needs a lot more rest and charges at such a slow pace that while other ones are hitting 100% in 1 hour, mine is hitting 19% by then if I’m lucky. So when it keeps hitting close to 5% and I’m getting warning signs, I must force myself to rest so I can get back up a few percents. This has taught me to be much more efficient in the 19% I have- and while I’m at my version of full capacity, what am I going to spend that energy on?

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About Me

I like red pandas and the color orange. This is my stage jolting down thoughts about social and cultural issues, which include chronic illness, physical and mental health, the environment, feminism, race relations. Some in-between personal journaling.
Just wandering around trying to find my niche in the world